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CD Diagnosis, but not sure - advice please :)

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CD Diagnosis, but not sure - advice please :)

Postby WalterW » Fri Feb 28, 2014 12:53 am

Hello,

I am new to the forum and this is my first post. I'm here because I was researching Conversion Disorder, which I was diagnosed with earlier today. The problem is that, although this makes sense, I am not fully in agreement. I don't understand why more tests have not been carried out before issuing this label - I'm kinda hoping for some advice here. Firstly, let me apologise for the length of this post:

I have been complaining about motor problems, chest pains and the feeling of having dizziness since I was a teenager. I gave up telling me GP about it, because the motor problems (twitching, numbness and lack of control of my right arm) were put down to "growing up", and the chest pain/dizziness put down to "asthma and allergies" (I suffered also from eczema and severe rhinitis).

I've also had problems with my sleeping pattern, swinging from insomnia to sleeping all the time, from ages 20-32, which in turn makes me feel sick and lacking motivation. Despite this, throughout my teens/twenties, I had no feeling of stress, worry, anxiety or the like. Schooling/college/Uni were enjoyable (yes, even the exams) - I had lots of friends, I enjoyed the workload, and I learned lots. I did the things I liked doing, socialised just like any other normal guy, and actively took part in sports. I had a freelance job in sports journalism (getting printed at the age of 16!) and had plenty of hobbies I enjoyed. Life was a total breeze.

I've now turned 33, and, although the dizziness/chest pains etc dimmed down throughout my late teens and twenties, they came back with a vengeance and other symptoms to boot around 4 years ago. Symptoms such as tunnel vision, trances, the feeling of having had a fit (during episodes I could understand people but give incoherent answers), memory loss, a dip in my vocabulary, spasms throughout my body, weakness in my arms and problems walking. I had a new GP by now, and I was sent for testing (focusing on epilepsy). Tests were negative, as were scans for strokes and a mini-heart attack - however, whilst looking at my heart, they found out I had a hole in the heart... nothing it was not linked to the episodes.

It became mild again for a short while (episodes were minimal from 31-32), but last year I did have to be put on antidepressants (the last bout of episodes cost me my job and a relationship). I was recommended speech therapy, however was not deemed a suitable candidate by the relevant organisations.

The symptoms have recently started up again, now bringing what I can only describe as electric shocks throughout my head and down my body. It's now put down to "Conversion Disorder", based on the fact I was on antidepressants and NOW feeling stressed.

I can see why they'd think this - but it doesn't explain the symptoms throughout my life. Using this as a concern, I appealed to the doc to try all avenues of testing - but they are adamant that it's CD and will not conduct any more tests.

So....what do you think? Correct diagnosis?

Thanks for your time, I appreciate this post was long :)

W
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Re: CD Diagnosis, but not sure - advice please :)

Postby angelina4 » Sat Mar 01, 2014 7:10 am

It's a tough situation to figure out when to stop looking for a physical explanation for symptoms. It's certainly not anything anyone on the internet can tell you. But I would at least entertain the idea that it's conversion disorder. I'd try and take a rational approach to this: ask your doctor what evidence is convincing him it's conversion disorder and try and evaluate that evidence for yourself. You can always get a second opinion, too, can't you? But while you're at it, there's no harm in starting to get treatment for a "possible" conversion disorder - you may find it helps.
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Re: CD Diagnosis, but not sure - advice please :)

Postby WalterW » Sat Mar 01, 2014 6:12 pm

Thank you for your reply :)

Of course I can entertain the thought it's CD, but there's some things that are concerning me: namely, that I was showing symptoms long before I had anything to be stressed about. Yes, I now suffer from depression, but that was diagnosed a year ago and this has been going on for the best part of 20 years.

I'm worried about meds. I actually came off my antidepressants four months ago after a suicide attempt - since coming off, I haven't even felt the slightest bit low. And the things that were hassling me at the time of the suicide sttempt are now way behind me, so again I'm not feeling stressed but showing these signs of CD.

I'm open to any speech therapy, but was denied access to groups because the groups themselves thought I didn't qualify. Also, I hear that a lot of this is based on determining a trigger - but my symptoms can show out of the blue when I'm having fun :)

I asked for a second opinion and other tests - but again, denied: I've been told that it's CD, and I "now have to 'deal' with it" (No problem if I knew what caused it!!).

I'm not an argumentative person, I'm just trying to fathom this one out :)
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Re: CD Diagnosis, but not sure - advice please :)

Postby angelina4 » Sun Mar 02, 2014 4:23 pm

What country are you in that you can be denied a second opinion? When you say speech therapy - I'm assuming you mean psychotherapy? Again, how can you be denied that? If you're not able to get any help for your symptoms - of course you're upset and confused! This seems very wrong to me.
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Re: CD Diagnosis, but not sure - advice please :)

Postby WalterW » Mon Mar 03, 2014 1:28 am

Thanks again Angelina :)

I live in Scotland. To be honest, perhaps "denied" was a strong word RE the second opinion. What is happening is that they are not going to do any more tests to rule out CD or rule something else in, which I feel is weird as they only did an EEG three years ago, and some sort of electro-pulse test (I forget what it was called) to look into my motor skills last month. They're adamant that it's CD from those two tests over three years, and won't explore further.

RE the speech therapy - yes that has definitely been denied. I do mean psychotherapy - they get you to talk in order to identify triggers to the problem. Here, these sessions are provided by organisations, and are conducted like this:

1 - you/your doctor phone for a referral
2 - they send you out a questionnaire by post
3 - you fill in the questionnaire, explaining how you feel and the side-effects of how you feel
4 - they collate the data and;

a) arrange a phone interview with a view to booking an appointment
b) decide you're not a case for their help

I got B!! They won't see me!!

According to my consultant (who made the diagnosis), there's a type of antidepressant that differs from what I had been taking before (Sertraline at 200mg) which *may* help. Trouble is the 6 month wait they reckon it takes to get fully into the system to find out. That, and I'm reluctant because they advise that a side effect of the antidepressant is depression.....which I'm just seeing the back of as I don't feel low. Just frustrated lol :)

Thanks again - it's really kind of you to respond x
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Re: CD Diagnosis, but not sure - advice please :)

Postby angelina4 » Mon Mar 03, 2014 4:54 am

Honestly I find your situation upsetting. You deserve more help than to be told to "deal with it."

I don't know whether more investigations are reasonable or not. There is a risk of over investigating medically unexplained symptoms, In that you can have false positives which lead to more investigations, all of which can carry their own risks. At a certain point you have to stop, but what that point is is a matter for careful medical judgement.

I will say that twenty years of medically unexplained symptoms of many types,is consistent with a somataform disorder, specifically somatization disorder. But if that's the case then you especially need to build a trusting working relationship with your GP. You have to have confidence that they will not ignore all your symptoms in the future, but investigate where it is warranted, because people with somataform disorders do get sick just like anyone else. To build that kind of relationship there has to be very good communication and respect between you two.

If you've been diagnosed with a psychiatric disorder which is causing such a significant impairment and distress, then you ought to be referred for mental health treatment. Are there avenues for appeal in the NHS when this treatment is being refused?

I've looked for clinical guidelines from the NHS on treating somatization or conversion disorder, and come up empty - they don't seem to exist. The APA in the US doesn't have any either. Which is too bad - having guidelines establishing a standard of care would help you fight for treatment.

I guess, since I have no advice on how to navigate the NHS, living in the US, my only other suggestion is to read all you can about somataform disorders. Maybe it will give you some insight on whether you think it fits you or doesn't, and how to manage it.

Whether it fits you or not, you do need to build a good relationship with your GP. If you feel that's not possible, is it possible to switch to another?
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Re: CD Diagnosis, but not sure - advice please :)

Postby WalterW » Mon Mar 03, 2014 7:09 pm

Thanks again :) Your input is always greatly appreciated x

My GP is great, I have a good relationship with him and will discuss it all with him for sure. I'm aware he's got limitations as he's just a GP, and if cases are above his head, he needs to make referrals to "experts". It's said experts who won't explore further! He even made the referrals to the bodies who provide the mental health treatment - it's said bodies who disagree with his assertion I need it.

I know I need it lol, because this scenario alone is enough to mess with the mind ;). Couldn't find anything via NHS either RE secondary opinion.

I'll be seeing my GP later in the week - I'll let you know what he says to the lack of support from those he entrusted with this case.

Thanks again for talking with me :)
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Re: CD Diagnosis, but not sure - advice please :)

Postby alwaysscared » Tue Apr 15, 2014 1:11 am

I too live in Scotland and am diagnosed with conversion & somatization. But also dignosed with fibro...what fits where I don't know. I do relate to your presentation of symptoms but mine came later in life. I find it very hard accepting the diagnosis. I hope and wish you recovery.
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